By Andrew H. Hook, CELA

There are hundreds of thousands of individuals with developmental disabilities, mental illness and other special needs who live with aging parents. As these primary caregivers become unable to continue in that role, who will replace them? Well-meaning relatives may initially promise, in all sincerity, to provide a home, but personal circumstances can change dramatically. Depending on siblings or other family members to step in can be a gamble. My attorney colleagues report that finding adequate housing for adults with disabilities is one of the biggest challenges that families face. The obstacles are daunting: cost, accessibility, waiting lists and patently illegal housing discrimination.

According to a report by CCD (Consortium for Citizens with Disabilities) and the Technical Assistance Collaborative, typical U.S. rental costs are 104 percent of the average monthly SSI (Supplemental Security Income) payment. People with special needs are, for the most part, priced out of unsubsidized housing. Many of them require widened doorways, lower kitchen counters and other accessibility features that are difficult to find and add to the expense. While there are various government programs meant to assist low-income individuals with disabilities, waiting lists are long.

Developing a Plan

Early planning is the best defense, and the first step is for parents to develop a financial strategy. They should ideally begin considering their options as their loved one approaches adulthood. At that point, the child may become eligible for SSI (Supplemental Security Income), and it’s a good time to assess the role that public benefits may play throughout life.

Unfortunately, government programs fail to cover many needs considered essential to quality of life (certain therapies, a service dog, a computer). Furthermore, qualifying for them is often based on financial need. For that reason, parents should consider creating a special needs trust (SNT) to protect the assets needed for economic security without endangering the individual’s eligibility for benefits. The sooner they create such a trust, the more options they’ll have for funding it. Investments will have time to grow, other family members will have an opportunity to contribute, and younger parents may be able to obtain attractively priced life insurance. The financial plan should be regularly reviewed and updated as circumstances change.

Once the family has a firm understanding of the public and personal resources available to them, they can assess the affordability of residential options and talk to their child about the type of living arrangement they’d be comfortable with.

  • Group homes bundled with supported living services – These residences, which are often managed by local nonprofits, typically serve up to eight individuals and provide 24-hour care. If support services prove unsatisfactory, a potentially disruptive relocation is required. Financed through state-specific Medicaid waiver programs, these homes have waiting lists that are often years long. If this option is of interest, the individual’s name should be submitted as early as possible.
  • Section 811 supportive housing – HUD provides incentives to the states to develop affordable housing and support services for individuals with disabilities who are 61 or younger. Availability varies by state and long waiting lists are common.
  • Section 8 housing vouchers – This HUD-sponsored program provides rent subsidies to low-income individuals. They must locate their own housing and arrange for all support services. Some Social Security offices have classified SNTs as “available resources,” making beneficiaries ineligible for the program, and there is ongoing debate on the issue.
  • Nursing homes – Most families would consider an institutional setting to be an undesirable alternative. The Supreme Court and public policy favor community-based options, but shortages mean that far too many individuals have no option but to be cared for in Medicaid-funded nursing homes.

Donating the Family Home

Some families consider placing the family home in an SNT so that the child can continue living there following the death of parents. If owned by the trust, a residence doesn’t constitute a countable resource for purposes of Medicaid or SSI. For this to be a viable alternative, though, the trust must have adequate funds to maintain the property and pay for any required support services.

Other families consider donating the house to a nonprofit, on condition that the child may continue to live there and be supported with services provided by the organization. This isn’t necessarily an easy fix, since the nonprofit may have concerns about the costs of upkeep.

No Simple Solutions

There are no easy answers to the residential riddle and, indeed, that’s why many individuals with disabilities remain in the parental home so long. But delaying discussion of this emotion-laden topic is unwise. As the years pass, choices narrow and obstacles grow. Losing parents is traumatic, and not having a viable long-term plan for living arrangements and care can turn the situation into a crisis.